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HIV Life >> Living With HIV

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kelseyelaine
Newbie

Reged: 11/24/08
Posts: 6
AIDS/18 years old
      #243322 - 11/24/08 04:26 AM

I am 18 years old and found out I had Full Blown AIDS at 16. I was 12 when I got raped by a man I babysat for. So I guess that means I had HIV for 4 years appromixatly. I never knew until the man who raped me died for AIDS. I was born with Lupus as a child. I get to flustered when I go to see my doctor so I barely remember what she says half the time. I live with my best friend and her family because my family was very abusive. The doctor said I will die a lot faster than a normal AIDS patient. I am scared and worried.

--------------------
<3Kelsey Elaine
(A life you don't live is still lost)
(a closed mouth gathers no foot)

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: AIDS/18 years old new
      #243323 - 11/24/08 08:43 AM

Having Lupus can certainly complicate things, but for your doctor to tell you that this will cause you to die sooner is wrong, wrong, wrong. Find another doctor. Make sure they are an Infectious Disease specialist.

If you haven't already signed up with your local AIDS Service Organization (ASO) do so. They can be a weatlh of information. And can help you figure out if and what finacial programs you may qualify for that can help pay for your medical care and medications.

Since you know you tend to get flustered you need to figure out what you can do that will help counteract that. Make a list of questions you want to ask. Take a pen and paper with you and write down the things the doctor tells you. Or ask her for a copy of her instructions. Get copies of your lab work for your own records. You should be having your viral load and CD4 count done every 3 months. You also have the right have someone sit in with you at your appointments. Take a friend that can help remember what the doctor says and maybe ask questions that might not have occurred to you.

Don't let that doctor scare you. Just find one that you like and can work with.


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cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: AIDS/18 years old new
      #243329 - 11/24/08 02:19 PM

may I also suggest you go to "Ask the Experts" on this website ASAP and present your fears and questions to them, I feel this may be an accelerated way for you to get help quickly. They ar very very good and can give you guidence, it might also be helpfull to givem some extra information like where you currently live and get treatment, meds etc.

Very very sorry to hear your situation, please don't give up

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

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Barbdoll
Regular

Reged: 07/30/08
Posts: 39
Loc: Belize
Re: AIDS/18 years old new
      #243379 - 11/27/08 02:10 PM

Hello there,
I read this post and was like damn.. You live your life thinking of how bad you have it, while someone else has it a lot harder than you. my prays go out to you.. an God bless your family. I do agree that a doctor should tell you things to make you want to give up. We all know the consequence of what we have but for our doctor to tell us the way your doctor told you that is wrong.
Try and focus on living your life for today. Enjoy your life and the people closest to you.. I was molested when i was a little girl getting raped I'm sure is different but i just wanted to share that with you.. Please don't give up just yet..

Barb

--------------------
Barbara A
Secretary
Belize City Belize
Central America

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Margaret
Regular

Reged: 03/15/07
Posts: 38
Dont stress new
      #243502 - 12/09/08 01:19 AM

Hi Love,
first off get rid of the Doctor and find another one.
Go and find free social services to help you cope
See a doctor about depression thats a real killer
Thats with or with out HIV. Theres nothing you can do about the past but you are in charge of your future.
See whats out there bet theres more thank you think
Love your pals if your not working cos your sick go do a few hours a week vol work to get you out and about
Remember my Mantra you live with HIV not die. Margaret

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: AIDS/18 years old new
      #243533 - 12/13/08 10:25 AM

Hello Kelsey,

I can tell you are a fine strong person, coping extremely well really with a really really unfortunate situation. Thanks for coming to "The Body" and sharing. This afternoon I am down and you have lifted me up.

I know what you mean by getting flustered when you see your doctor. It happens to me every time. All this extra baggage we people with HIV have to carry. It IS a strain. We HAVE TO cope with it as best we can. And I think one of the most important ways is by becoming quitely assertive, by equipping ourselves with the skills to survive. Kelsey, you're 18, I don't know what you are doing, working at, or maybe studying, but do consider whether a course or two in assertiveness-training and that kind of thing would be a good idea. You already sound like you refuse to put up with some of the nonsense that comes at you. That's good.

One of the things that we people with HIV have to handle, it seems to me, are the people without HIV who are supposed to help us. They have NO IDEA what it is REALLY LIKE to be living with HIV on a daily basis, no matter how hard they try to sympathise and so forth. Your doctor could be one of these people. It sounds to me that his telling you that you will die faster than other people with HIV was inappropriate. I've had similarly careless things said to me by doctors. If you look through my posts here at "The Body" you will read about one doctor who was really out of line once. Everyone here told me to report him and so I did, in a professional manner of course. And the matter was dealt with. He was given a good ticking off! It took me one hell of a lot of strength to do what I did - and I am a person quite experienced at a lodging complaints. I believe a lot of HIV people settle for poor treatment from doctors. We mustn't.

Kelsey, you have to be "Superwoman" in your condition. It's the only way to give yourself the best chances. I get the strong feeling that you can be that "Superwoman", that you can cope, and that you can cope very well. It will take a lot of determination but you can do it.

Regards.


--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #243561 - 12/17/08 08:35 AM



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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: AIDS/18 years old new
      #243574 - 12/18/08 05:58 AM

Hi AIDS2HIV.

The advice you have posted is excellent. I have read it before and it has spurred me to require better of my doctors.

But I have to say that we need to remember that "The Body" is an international website with an international following and while it may be possible for people in the USA to easily swap doctors that it is definitely not the case in many other parts of the world. In some places it is impossible. You are allocated one doctor and that's the end of the story. You have no choice. You are stuck with that doctor.

I live in the UK but I don't live in a city. If I lived in a city, changing from one doctors' practice to another is not easy. I would have to apply to another practice and only after they reviewed my application and approved it might they then retrieve all my records via the central co-ordinating system. However, I don't live in city, nor even a town. My nearest doctor is five miles away. After that the nearest doctor is 10 miles away. So provided that doctor approved my application I would be saddling myself with much more travelling. As for HIV care, the choice is even more limited, of course. As it is I have to drive 60 miles to the nearest clinic. There is only one doctor there. If I decide I can't tolerate him or improve him, then the next nearest clinic to me is 70 miles away in the other direction.

However, I am lucky. In places in India, China, South America, and Africa there is absolutely no choice of doctor whatsoever. In fact, in some places you are lucky if HIV treatment is even available.

What all this means is that unless you are living in a big city with many doctors and hospitals to choose from and a system that allows you to choose, it is YOU, the patient, who has to manage things. If your doctor is a piece of dead unfeeling wood, YOU HAVE TO deal with him. That's why I believe assertion-training is top-priority for people with HIV. We don't just have to manage this awful disease, we have to manage many of those who SHOULD be caring for us.

Eddy.



--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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True_poet
Newbie

Reged: 07/16/09
Posts: 4
Loc: Ft worth TX
Re: AIDS/18 years old new
      #246594 - 07/17/09 12:46 AM

just pray 2 god and u will b okay dnt matter what the doctor say kuz god has the last say who live and who dies

--------------------
Prophet poet

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BrokenWingedBird
Expert

Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: AIDS/18 years old new
      #246602 - 07/17/09 01:29 PM

Please ignore self-styled True Poet's recommendation that all you need to do is "just pray 2 god".

Praying to any one of the dozens of gods created by humankind will do you absolutely no good whatsoever. Get yourself along to a decent HIV clinic and rigorously follow your treatment plan. Put your faith in medical science. It is medical science that is stopping us from dying, and certainly no imaginary "god".

--------------------
Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

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